There are approximately 30,000 Americans currently living with cystic fibrosis. They struggle every day just to breathe. Many die in their 20's and 30's, but some die much younger. My daughter, Reagan, is one of them. I walk for her and hope you will support me in my efforts.
Reagan was diagnosed with cystic fibrosis (CF) before she was born. After her birth, the diagnosis was confirmed through newborn screening. Cystic Fibrosis is a life shortening, genetic disease for which there is no cure. For Reagan to stay "healthy", she must do chest physical therapy twice per day for 30 minutes. With these treatments, she must do two different inhaled medicines. When she gets a cold, those treatments increase to 3-4 times per day. Because her CF caused her pancreas did not function properly, she had to take enzymes to help her digest her food before all meals and snacks. She also had to take special vitamins to help her absorb fats. In 2017, she became eligible for a new medicine that was supposed to slow (not stop) the progression of the disease called Kalydeco. It was an important first step. Within 6 months of taking that medicine, we tested her pancreas and it was miraculously functioning completely normally. She no longer has to take any enzymes or a special vitamin. We also noticed for the first time her annual x-ray didn't show additional scarring. Unfortunately that didn't last and her most recent x-ray showed more scarring than expected. This was a reminder that the disease is still there and still causing progressive damage.
Kalydeco was the equivalent of winning a battle, but the war rages on. It is not enough to simply slow the progression, that still means people will die from it. We need to cure it. Last fall the CFF announced its Path to a Cure initiative. The plan is to invest $500 million dollars over the next 5 years in the hope that huge scientific breakthroughs are discovered. The money that we raise in Great Strides goes toward the funding of clinical trials and investing in promising pharmaceutical companies who can potentially create life changing medicines for those with CF. People are still dying very young and many end up on the lung transplant list. Lung transplantation is also not a cure, as the average lung transplant patient lives only 6 years post transplant. It is with this unsettling information that we focus our efforts on finding better medicines that will eventually completely stop the progression of the disease before Reagan's lungs are damaged significantly.
Walk with us, donate to the Cystic Fibrosis Foundation, send us notes of encouragement. All of these things are welcome. Just please don't ignore us. It's easy to take the good health of yourself or a loved one for granted until you don't have it anymore. We certainly expected to have a healthy child. Please join me. My hope is that Reagan will be able to live a full, long life enjoying her future children and grandchildren. I want her to imagine what the future holds for her and not whether she'll have one.
Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. Please help us to add years to Reagan's life! Share this with anyone you think would be willing to give. Thank you so much!
Lisa, Bill, Reagan, and Rylie Moyer